According to a story from eurekalert.org, a recently study has helped reveal some of the genes that are associated with hemiplegic migraine headaches. About 15-20 percent of adults in the…
According to a new study, pregnant women with high levels of cortisol and high blood pressure may have Cushing's disease. Although Cushing's is rare during a woman's pregnancy, the conclusion…
A phase 3 Murano clinical trial has shown that combining the drugs Venclexta (venetoclax) and Rituxan (rituximab) could be an effective treatment for chronic lymphocytic leukaemia, reports Cancer Updates, Research,…
A recent study published online at JAMA Neurology, provides evidence that exercise is not only safe for Parkinson's disease, but may also hold the key to stopping the advancement of…
Patient Worthy recently attended ALD Life’s Community Weekend 2018, which brought together people and families with Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN), and scientists, researchers, and doctors. One of the speakers…
We all have those well intentioned colleagues, friends, and family members. You try to explain to them what primary biliary cholangitis (PBC) is, what’s going on in your body, and what…
The U.S. Food and Drug Administration (FDA) has just approved a drug called Darzalex (daratumumab) in combination with the drug Velcade (bortezomib), melphalan, and prednisone (known collectively as VMP) for…
According to a story from eurekalert.org, the first patient that received treatment with alipogene tiparovovec reported positive results after an eighteen month treatment period. Alipogene tiparovovec is a gene therapy…
According to a story from Ankylosing Spondylitis News, treatment of chronic pain is always a difficult task for health care professionals. Patients with ankylosing spondylitis (AS) are especially prone to…
According to a story from the Leamington Observer, four-year-old George Young's first words were 'mama' and 'papa,' but he did not know how to say them for very long. George's…
A popular book by Dr. Seuss that is often given to graduates is Oh the Places You'll Go. Now, suppose Dr. Seuss had entered the rare disease world. Perhaps he…
When I was pregnant with my second child, I knew it would be different. We had all the essentials from having my daughter a few years earlier, and advice from…
Ever since I was little I have always loved the thought of Mother’s Day. My mom has always been a hero in my mind. I remember thinking to myself, “She…
According to a story from the Westside Gazette, it is essential for young men to be aware of the risk of testicular cancer and to know when it might be…
According to a story from The Tennessean, mother Melissa Hogan has been inspired by her son Case's Hunter syndrome to start a nonprofit organization called Project Alive. The primary purpose…
Happy Pre-Mother's Day Everybody! This week we're spotlighting four articles from or about members of the rare community. We have a tribute to nurses from a rare mom recognizing their…
According to a story from Sickle Cell Anemia News, the St. Jude Children's Research Hospital just received $1 million in grant funding from The Links Foundation, which is one of…
Migraines are not on the usual list of symptoms of multiple sclerosis (MS), but researchers know that, for many MS patients, migraines are somehow associated with this neurological disease that…
No one should outlive their child. Losing two children to the same rare disease is a pain that most parents can never understand and hopefully never will. According to a…
According to a story from Newshub, Freda Evans learned early on that there were no treatments covered under the New Zealand health care system to treat her Pompe disease. Freda…
Researchers from Case Western Reserve University accomplished a groundbreaking medical triumph. In partnership with six other institutions, the team inhibited cancer cells from spreading to different parts of the body.…
May is Lyme disease awareness month. Responding to an explosion in Lyme disease and tick-borne illnesses, the Tick-Borne Disease Working Group met for the first time in Washington, D.C. in December…
According to a story from blackpoolgazette.co.uk, the NHS has decided to postpone a decision to approve a drug for the treatment of Batten disease. This illness, which is fatal is…
According to a story from the Yorkshire Evening Post, five-year-old Toby Nye, from Leeds, has been seeing significant benefit from an antibody therapy treatment for his neuroblastoma. The therapy is…
The hashtag #hotpersoninawheelchair went viral after the Youtuber and activist Annie Segarra used it as a response to an offensive tweet by Ken Jennings, reports The Guardian. Jennings, best known…
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